Birthday weekend

Hi Connor,

Sorry we haven't written you the past two nights buddy.  It's certainly not because we haven't been thinking about you or spending lots of time with you.  Saturday night the internet wasn't working and last night we were just too tired by the time we sat down.  I figured this morning I would recap the weekend for you since it was a big birthday weekend in our family.

Saturday started off a little rough.  You were still pretty angry about that mask being on so with the help of some medicine you took a long morning nap.  In the late afternoon you decided to wake up and deal with the fact that the mask wasn't going anywhere.  I think you wanted to be a part of the birthday party because you woke up almost immediately after Grandma arrived.  See Saturday you turned three months old.  Can you believe it?  Three months already.  Of course Grandma brought you a birthday sign to hang on your crib and a birthday present.  This month she got you a new pacifier which is awesome since you have been loving yours these days.  It has an elephant attached to it and mommy thinks it's pretty cute.

You weren't the only one with a special day on Saturday.  Saturday was also Grandma's birthday but she's a little older than three months.  Mommy didn't have time to get her a present this year but thanks to you I think you covered for both of us by being awake and happy with her.  You played with Grandma, Grandpa and Gigi for a LONG time Saturday afternoon and evening.  It was so fun for daddy and I to see you awake and having so much fun with your grandparents.  Connor you are the perfect gift for everyone.

Sunday was another special day.  Your biggest hero celebrated his birthday....your daddy.  The night before daddy said that all he wanted for his birthday was for you to have a good day. Connor you sure did deliver.  You and I started our day out with a good report from the doctors.  By the time daddy got here you were bathed, dressed, off the CPAP, onto your high flow oxygen and having the time of your life playing with Gigi.
You and Gigi listened to lots of music, talked, and danced.  Gigi said you were really liking rock and roll music yesterday.  Then daddy held you and you couldn't stop smiling.  Next Gigi finally got her turn to snuggle and you both seemed pretty happy.

After lunch you were getting a little tired and Grandma came to babysit while Gigi took mommy and daddy out.  We had lots of fun doing some Christmas shopping we never got to do and birthday shopping for daddy.  We even went out to dinner and ate some tasty nachos, one of daddy's favorites.  While we were out Grandma said you were a super good boy.  You napped and played a little bit.  You even helped with a special project that mommy asked the nurses to do while we were out.  You made daddy a birthday card signed with your cute little footprints.  Thanks for being such a good little helper and for behaving so well for Grandma.  What would we do without Grandma's and Gigi's?

Thank you for making daddy's birthday extra special.  As you know he is a pretty amazing guy and deserves nothing but the best.  You sure have a way of making him smile no matter what else in the world is going on and he sure seems to make you smile too.

We love you Connor!

-Mommy

A rough one....

Hi Connor,

There's no way to sugar coat yesterday,  it was a bad day.  Mommy had a weird feeling in the middle of the night that something was wrong but decided she was probably just worrying for nothing.  Turns out mommy may have been onto something.  When I walked into your room yesterday morning you just didn't look like yourself.  I took off my coat and washed my hands like I always do.  By the time I turned back around your color was pretty bad and your numbers were dropping.  I quickly got your nurse and she started checking you out.  You weren't upset but it looked like you maybe had gotten sick a little bit by the stuff you had in your mouth.

Before long you had a whole team of people in your room rushing around and checking you out.  Your heart rate dropped for a minute and your oxygen got pretty low for a little bit.  You gave mommy a good scare.  Luckily you had all the right people around you and they were able to get things stabilized pretty quickly.  Unfortunately that meant putting the CPAP mask back on you.  As you all too well know, that thing is the pits.  You fought hard for several hours against it, kicking your legs, turning your head and pulling on the mask with your hands even through your little mittens.  Finally the doctors found the right amount of medicine to keep you calm and you were able to rest most of the evening.

The doctors think that you spit up some of your milkshake and it went into your lungs until you coughed it back up.  The fancy word for this is aspiration.  This means they have to do another study on your belly to see if they may need to modify your new feeding tube in order to keep this from happening again.  Boo for more tests, boo for stopping your milkshakes, and boo for having to wear that crazy mask.  I'm so sorry buddy.  I hate to see you go through all of this.  I know mommy and daddy feel like we took about 10 steps back yesterday so I can't imagine what you feel like.  When you open your little eyes and glance at me that stare says it all.  You are pretty ticked too.  Please try and hang in there and get some rest the next day or two.

Hopefully today will be yet another fresh start in regaining some ground.  You are resting peacefully now and we are waiting to hear what today's plan entails.  Your Gigi came all the way from Texas to see you so that means you have a lot of playtime and love coming your way.  Plus today is your Grandma's birthday so I'm sure she'll be by to see her favorite little man.  Hopefully we can get that mask off so we can all check out that cute face of yours and get back to business.  We are so proud of how well you are dealing with all these obstacles and how strong your will to fight is.  You are amazing.  Happy 3 month Birthday.

We love you Connor.

-Mommy

Bouncey...

Hello Connor,

This week has been an up and down week. We have had some really really high moments and we have had some really low moments (only one "really" on the low moments) and we seem to just keep on bouncing back and forth between the two. A while back we talked about roller coasters and how sometimes our time with you is just like a roller coaster ride. Its like we get going up and up and up only to have the bottom fall out when we least expect it and have our stomachs turn cartwheels as we race downward. But then, before you know it the fall is over and things have leveled out again. Then there are some twists and some turns and maybe a loop or two here and there but eventually we are climbing again. The one reassuring thing that we have to remember about roller coasters though, is that we always end up on level ground.

So as I'm sure you guessed, that means today was one of those falls. It started this morning when mommy walked into a war zone and you throwing an epic fit. Your heart rate went super high and would not come down, your temperature went too high and would not come down either. The doctors had their theories, they gave you medicines, mommy tried every trick in the book, but you were not anywhere near being happy. Then it happened, you blew up your diaper. As it turns out your stomach has been kind of upset since they starting putting things in it again. Its been over a month since you had anything in your stomach and then all of a sudden you are getting medicines and milkshakes and your little belly wasn't sure how to deal with it. Eventually it worked it out though, and you were able to be calmed.

That didn't fix all your problems though, you still sounded really "gunky" again today and you just didn't look quite right. The fall was on full speed. Mommy and daddy both felt worried about you because we were caught up in the fall. After several hours of you getting some much needed rest you did start to look more like yourself and sound better. Mommy and I had to let our stomachs catch up with us but the truth was we were leveling back out. Maybe we were not climbing like the day before but we were level and possibly bouncing back, so it was time to breathe again, all three of us.

But you did have a little bit of fun today. After one of your favorite respiratory therapists got done thumping you for your chest percussion therapy she suggested we sit you up some. So guess what we got out...

Yep, you are in that bouncey seat again and this time you fit! You were able to sit up and take a good nap and even did your OT for the day while in the seat. It was pretty cool to see. But I have to admit I am a bit worried that you may not like your bouncey seat because as you can see in the picture above, the snail that hangs above your head was not your favorite. If looks could kill that little stuffed animal would have been in a bad place before the day was over. Maybe he'll grow on you.

So for now just get some more rest, maybe your down day today means tomorrow will be a great up day. You are getting a special present tomorrow, she arrives after one o'clock in the afternoon and I'm sure she is going to be spending a lot of time playing with you in the next few days. So rest up and get ready for some fun. Sweet dreams buddy.

We love you Connor.

- Daddy

Hello again...

Connor,

Well hello there little man, its been a while since we have seen "your character" as Dr. Ilias puts it but we are certainly glad to see that the last week of ups and downs and surgeries and sedation haven't taken anything away from you. Actually, if anything, I would have to say that in that week or so you have managed to find a little bit more spunk and even learned a few new tricks. I'm sure you were practicing while mommy and daddy were sleeping so we wouldn't know about it. Stinker. If that's how you want to do it though, fine with us, we will be more than happy to go along with your little plan.

Today has been a good day for you, you got to see several of your favorite doctors (one of which stuck a light up your nose) and a few of your favorite nurses, and you got physical and occupational therapy. And all of that was after a bath early this morning. So you have been awake for a good portion of the day, starting around seven when your day nurse got here and did her checks and pokes and prods. She said you woke up happy and alert and when mommy got here a little while after that you were still wide-eyed and ready for some interaction. So I'm sure you can guess what you and mommy did.

"That's right Pinky, the same thing you do every morning.... try to take over the world!" Well maybe you weren't actually trying to take over the world (that is just one of my favorite quotes and since it is from a cartoon I thought you could handle it) but you did do the same thing you do every morning. PICTURES. As you can see you were bright-eyed and ready to strike a pose GQ style. Mommy was so impressed with how you were doing and how you looked that she made sure to tell me that even though the doctors weaned your oxygen support down you are looking better than yesterday. So woo hoo for that.

Where to start with the rest of your day.... Your kidney doctor came in, he has been one of your favorites for a while now, and gave mommy some good news about you and your little kidneys and bladder. They are doing so well that you are going down to only getting cath'd twice a day instead of three times. So if he wasn't one of your favorite doctors before then you can bet the farm he is now. Even though our excitement at this news must pale in comparison to yours I have to admit mommy and I are pretty thrilled that we won't be having to wake you up in the middle of the night with a catheter. That was a pretty good start to the day.

Then Dr. B (still can't remember how to spell his name but he was the one who did your tummy surgery) came by and took a look and poked around on your belly. Now he is the only one who really "pokes" on your belly right now because he knows exactly where everything is in there, and his pokes quickly told him you were doing great. He said that your surgery (this will be a surprise) was one he hadn't performed before (at least not with the same kind of situation and complications) and that he was looking forward to seeing just how well you were going to do. Your scars looked good and from what we can tell it looks like you are getting better at swallowing. So that was another mark in the win column for the day.

Then your cardiology doctors rounded on you and told mommy that you were looking great and doing even better with your numbers. They just finished weaning your high-flow down to where they wanted it so they could start on the next step in your climb out of the CICU. That next step is one you always look forward to. Milkshakes, and lots of 'em. Mommy has been working hard (there is talk of her starting a dairy farm in the near future) to make you plenty of milkshakes and today you are back on them and building up to where you were before your tummy surgery. Before you know it you will be growing like a weed again, and that is indeed a good thing.

Then came your therapy sessions. Physical therapy came in first and worked with you for quite a while and was thrilled with how well you were doing. Apparently we need to work on your hamstring flexibility a little bit but I told them that you get that from your dad and pretty much every other man on your dad's side of the family. If you work on it I promise I will too, and I'll make sure and tell your Pappaw and uncle Sebastian to get their buts in gear too. Then occupational therapy spent some time with you working on your "bobble head problem" as mommy calls it. You were doing a great job and sat up with her and showed off your new hand skills (grabbing everything in sight, including your other hand and your mouth). Then, and we have to mention this just in case your daddy's friend Justin is reading, you were working on rolling over and practically got all the way over on your right side. You are almost ready for your wresting match.

Now about three seconds after your therapy session ended and we got you positioned again you were passed out. You were ready for your busy day to come to a resting point so you could get some beauty sleep. You crashed for about three or four hours and have only gotten back up now because your night nurse had to do her checks and pokes and prods. I give you about ten more minutes then it will be right back to nite nite time for you. That works out well though because your mommy and I are still trying to catch up from not sleeping much the other night and we are about ready to get some sleep ourselves.

So for now you just close your eyes, think about some of the fun times you and mommy had today, and dream some sweet dreams. Oh, and one more thing, quit trying to pull your G-tube out Buster. We are glad to have you and "your character" back and look forward to what tomorrow brings. Mommy and I are so proud of you and how well you are doing.

Mommy and Daddy love you Connor.

- Daddy

The reason for the season

Hi little man,

It's hard to believe that Christmas is almost over already but then again it's kind of hard to believe Christmas ever began.  At first mommy was a little sad about what a different type of Christmas this year would be.  I missed the decorations, the baking, the shopping, the wrapping, the music and all the planning.  Now as the season has come and gone without doing most of those things I realize I needed a little lesson from Connor.  Although I do love all of those parts of Christmas they aren't what Christmas is truly about.  So I wanted to make sure and tell the real reason for the season.

Christmas is the holiday in which we celebrate the birth of baby Jesus.  As you grow up mommy and daddy will tell you all the awesome details of his story.  When Jesus was born he wasn't born into the best conditions and certainly didn't have an easy path ahead of him but he went on to change the world forever.  Jesus brought peace to earth and his life brought thousands of people together.  He fought against the hardest of circumstances and prevailed.  This reminds me of another little boy I know and love.  So don't get me wrong you aren't Jesus but I believe if you keep following in his path you can't go wrong.  In fact he is with you every step of this journey and is the reason you have that amazing spirit inside of you.

So today as mommy sat in the hospital and thought about her Christmas she realized she didn't have anything to complain about.  Last night mommy and daddy were surrounded by family that love us and you very much.  We were able to laugh and smile while we told stories about you.  We showed off adorable pictures of you like all proud parents do.  Today we talked to all the family we couldn't be with in person while we watched you sleep like an angel.  Both mommy and daddy snuggled with you and we even got to put you in your Christmas outfit.  

Christmas isn't about the gifts or the fancy foods so although we were spoiled with some of that last night we were just as happy eating peanut butter and jelly tonight and sitting in a hospital room with the best present in the world.....you. Connor you are the biggest blessing I have ever received and I thank God everyday for letting me be your mommy.  Daddy and I love you more than words can say.  We are so thankful for how hard you have fought and how far you have come.  You have reminded us the real reason for the Christmas season.  We are especially thankful for the doctors, nurses and therapists who take care of you everyday.  We are thankful for all of our awesome family and friends that continue to support us in this journey.  We are very thankful for the thousands of people who don't know you but pray for you everyday  We are thankful for all the staff and volunteers at the Ronald McDonald house who have given us a place to live.  We are thankful to God for giving us strength, hope, and faith to face each day and most importantly for giving us you, our true Christmas miracle.

Cutest little Santa's helper ever.

Merry Christmas to all and to all a good night!

We love you Connor.  Hope you had a great first Christmas.  

-Mommy